Thyroid eye disease

Also called Graves' orbitopathy, Thyroid-associated ophthalmopathy

Autoimmune inflammation behind the eyes, usually with Graves' disease. Smoking makes it dramatically worse, and it can threaten sight.

What it is

Thyroid eye disease affects around a quarter of people with hyperthyroidism from Graves' disease, and it occasionally occurs with normal or underactive thyroid function.

The immune system inflames the muscles and fat behind the eye, pushing the eye forward and restricting its movement.

It has a critical feature that changes management: an active inflammatory phase lasting somewhere between six months and two years, followed by a stable phase. Treatment to suppress inflammation only works during the active phase, and surgery to correct appearance should wait until the stable one.

Two things matter more than anything else. Smoking makes thyroid eye disease substantially worse and makes treatment less effective, and stopping is the single most useful intervention available. And a small number of people develop optic nerve compression, which threatens sight and is an emergency.

Signs you might notice

Gritty, watery, red eyes and a feeling of pressure behind them.

Eyes appearing to bulge or stare. Lid retraction, so more white shows above the iris.

Double vision, particularly on looking up or sideways, from restricted muscles.

Swelling of the eyelids, worse in the morning.

Sight-threatening signs: reduced vision, colours looking washed out, particularly red, or a new blind spot. Those are an emergency.

How it can affect day-to-day life

The change in appearance is distressing and often dismissed as cosmetic by services and by employers. It affects how people are perceived, and it is a legitimate reason for treatment.

Double vision affects driving and work, and prisms in glasses help a great deal in the meantime.

Dry eyes at night are worsened by lids that do not fully close, and untreated that causes corneal damage.

Treating the thyroid itself does not resolve the eye disease, and radioiodine can worsen it, so the two need coordinating between specialists.

Supporting someone well

Stop smoking. This is the highest-impact action in this entry by a wide margin.

Use lubricating drops through the day and ointment at night, and tape the lids if they do not close.

Sleep with the head elevated to reduce morning swelling.

Get any reduction in vision or colour perception assessed the same day.

Ask for referral to a combined thyroid eye clinic where an endocrinologist and an ophthalmologist see you together. These exist and they produce better outcomes.

Ask about selenium supplementation in mild active disease, which has trial support.

Wait for the stable phase before any corrective surgery.

Where to get help

Ask a GP or endocrinologist for urgent ophthalmology referral, and mention thyroid eye disease specifically.

Thyroid Eye Disease Charitable Trust provide support and a specialist list.

Loss of vision or colour vision is an emergency: go to eye casualty.